Sunday, November 26, 2000
I was still tired today, even with the blood transfusion I got last night. My red blood cell count was really low, so the doctors decided to give me a boost. I'm in a vicious cycle and can’t seem to overcome the “preemie anemia” issue. Every time I make it 16-18 hours off the vent, I become anemic and exhausted. When my iron level gets low, I have to work harder to breathe which increases my heart rate.
When this happened a couple weeks ago, the doctors didn't give me a transfusion right away and hoped my body would make red blood cells. After a couple of days, the doctors gave in and gave me a transfusion. This time, the docs gave me the transfusion right away hoping that I could keep up with the ventilator weans.
My schedule today was to go for 18 hours off the ventilator (three six hour trials). So far, I have been doing pretty well. Although, Mommy and Daddy could tell I was tired because I was sleeping almost the entire time they visited today.
This week will be very critical in terms of when I will go home and what type of “medical equipment” I'll need. The doctors would like to discharge me before Christmas, but there are still a lot of issues to work out before that happens.
First, I need to either get off the ventilator completely or at least become more stable. It is possible that I'll be discharged and still need to be on a ventilator at night. The second major issue will be feeding. My speech therapist is going to have to give a verdict at to whether or not I will be able to take a bottle. Mommy and Daddy are going to push her to at least try the bottle this week. I'm sucking pretty well on my pacifier, especially when I'm not on the ventilator.
The third issue will be a decision on how well my C1 and C2 vertebrae are fusing together. I'm having X-rays taken on Tuesday to evaluate my vertebrae. Mommy and Daddy are really praying that my bones have grown enough to get out of that darn ortho board!
At least I had great nurses today, and Mommy & Daddy held me for several hours. Before they left, Mommy said I better get some rest because it’s going to be a busy week!